Hi. My name's Jeff and I've had myasthenia gravis for about fifteen years, but it wasn't properly diagnosed until a couple years ago. My first symptoms were blurred vision, but it eventually spread to my back and hip muscles. Looking back, it should have been an obvious diagnosis based on the symptoms, but somehow it got missed by every neurologist I saw...and the neurologist who finally diagnosed it refused to believe it was generalized, despite the fact that I couldn't walk anymore.

Eventually I realized that he hadn't treated many of these cases and ended up switching to University of Maryland. Its been an uphill battle since then. I've been through three rounds of PLEX, one of Rituxan, and am being treated with Prednisone, cellcept, mestinon, and IVIG, but I've gone from barely functioning to relatively stable. I'm currently tapering the Prednisone so that I can have a thymectomy. I've been told I have to be at least at 30mg, and am currently at 37.5 (down from 60 a few months ago). I'm hopeful that it'll help in the long run, though.